Data bleeding everywhere: a story of period trackers
Sadaf Khan
This is an excerpt from an essay by Sadaf Khan, written for and published as part of the Bodies of Evidence collection of Deep Dives. The Bodies of Evidence collection, edited by Bishakha Datta and Richa Kaul Padte, is a collaboration between Point of View and the Centre for Internet and Society, undertaken as part of the Big Data for Development Network supported by International Development Research Centre, Canada. Please read the full essay on Deep Dives.
…By now there are a number of questions buzzing around my head, most of them unasked. Are users comfortable with so much of their data being collected? Are there really algorithms that string together all this data into medically-relevant trends? How reliable can these trends be when usage is erratic? Are period tracking apps pioneering, fundamental elements of a future where medical aid is digital and reliable data is inevitably linked to the provision of medical services? And if so, are privacy and health soon to become conflicting rights?
I also want to find out how users understand data collection and privacy before giving apps consent to utilize their data and information as they will. Hareem says she gives apps informed consent. ‘If my data becomes a part of the statistics aiding medical research, why not? There is no harm in it. I am getting a good service, and if my data helps create a better understanding as a part of a larger statistical pool, they are welcome to use it.’
But is she really sure that this information will be used only as anonymised data for medical research? ‘Look at the kind of information that is being collected,’ she answers. ‘Dates, mood, consistency of mucus, basal temperature. What kind of use does one have for this data?’
Naila, in turn, says: ‘Honestly, I have never really thought about what happens to the data the application collects. Obviously I enter detailed information about my cycle and my moods and my sex life. But a), my account is under a fake name and b), even if it wasn’t, who would have any use for stuff like when my period starts and ends and what my mood or digestive system is like at any given moment?’
In fact, this sentiment is shared among all the women interviewed for this piece — what use would anyone have for this data?
As users, we often imagine our own data as anonymised within a huge dataset. But as users, we don’t have enough information about how our data is being used — or will be used in future. The open and at times vague language of a platform’s terms and conditions allows menstrual apps to use data in ways that I may not know of. Some apps continue to hold customer data even after an account is deleted. Even though I may technically ‘agree’ to the terms and conditions, is this fully informed consent?
One of the big concerns around this kind of medical information being collected is the potential for collaborations with big pharmaceuticals and other health service providers. With apps sitting on a goldmine of users’ fertility and health information, health service providers might mine their data for potential consumers and reach out directly to them. While this is like any targeted marketing campaign, the fact that the advertiser is likely to be offering medical services to women suffering from infertility and are at their most vulnerable, raises totally different ethical concerns.
And these apps and their businesses might grow in directions that users haven’t taken into consideration. Take Ovia’s health feature for companies to buy premium services for their employees. While the gesture is packaged as a goodwill one, it also means that an employer has access to extremely private and intimate medical information about their women employees. And while the data set is anonymised, it is still possible to figure out the identity of users based on specific information. For example, how many women in any company are pregnant at any given time?…
Pregnant a year after my miscarriage, I initially downloaded multiple apps in a bid to find a good fit. I don’t know which one of these was in communication with Facebook. But almost immediately, my Facebook timeline started becoming littered with ads for baby stuff — clothes, shoes bibs, prams, cribs, ointments for stretch marks, maternity wear, the works.
It makes me think of those old school clockwork-style videos. You drop a ball and off it goes: making dominos fall, knocking over pots and pans, setting in motion absurd, synchronized mechanisms. Similarly, I drop my data and watch it hurtle into my life, on to other platforms, off to vendors. Maybe to stalkers? To employers? Who knows.
Author
Sadaf Khan is Co-Founder and Director Programs of Media Matters for Democracy, Pakistan. Sadaf has been associated with media and media development sector in Pakistan since 2002. She has worked with major print and broadcast outlets in the country, mostly behind the camera and has dabbled in all forms of writing and production. For the last four years she has been working with media development CSOs, mainly for policy advocacy, media ethics, journalist safety and capacity building for development, data and digital journalism. Sadaf has had the opportunity to publish multiple research reports on thematic media content in Pakistan and has worked specifically on conflict related reporting in national and regional outlets. She is also interested in policy and content research and specifically enjoys deconstruction of discourse in media content.
